Welcome to the St. Mary’s Healthcare System Resource Directory
This resource directory is for families/caregivers of children who have medically complex needs or long-lasting conditions that require extra health care and support services.
The information in this directory is provided to help you find resources to assist you with finding help for your child and family. The range of care/disability/health issues varies amongst children so the information may or may not pertain to your child.
What you'll find
After a family learns that their child is ill parents/caregivers typically begin to think about how they can best care for their child. The resources in this directory include agencies, service providers, advocacy organizations, and other resources to assist with providing a quality life for children with medically complex needs.
To find a resource enter your area of interest in the search box on the side bar and the location in the box located on the top of the screen. The directory is intended to assist you with being the best advocate for your child. Although we attempt to keep the directory current resources change constantly.
Got it!All Resources
-
Orphanet orpha.net
Information on rare diseases and new drug treatments from all over the world. Several languages.
-
Brave Kids bravekids.org
Website has information on children’s illnesses and disabilities, message boards for parents & kids and a resource guide that you can search by zip code.
-
Angela’s House angelashouse.org
Residential group home for technology dependent children. Also provides case management for non-Medicaid & Care at Home children.
Contact Information
Phone: 631-979-2620
Address
P.O. Box 5052, Hauppauge, NY 11788
-
DREAMMS Assistive Technology for Children with Special Needs DREAMMS.org
Facilitates technology access for children with special needs. Information clearinghouse and search facility.
-
The Queens Community House queenscommunityhouse.org
Provides programs and services which help people improve their lives. Provides housing assistance, financial literacy workshops, and citizenship classes. Bengali, Chinese, French, Pashto, Russian, Spanish. Do not have to be a documented immigrant to receive services.
Contact Information
Immigrant Specific Site: 718-898-7461
Main Site: 718-592-5757
Address
Immigrant Specific Site: 74-09 37th Avenue, Suite 421, Jackson Heights, NY 11372 Main Site: 108-25 62nd Drive, Forest Hills, NY 11375
-
Find a Friend
Support groups for parents or caregivers of children with any chronic disease or special needs. English group meets the 1st Tuesday of the month, from 12-1:30. Spanish group meets the 2nd Monday of the month, from 12-1:30.
Contact Information
718-741-2223
Address
The Children's Hospital at Montefiore, 3415 Bainbridge Avenue, Family Learning Place, Bronx, NY 10467
-
National Respite Locator Service archrespite.org
Helps parents & caregivers find respite services in their state and local area to match their specific needs. The database is provided for informational purposes only and is not all-inclusive. The fact that an organization is or is not listed in the database does not represent an endorsement or lack of endorsement for any purpose.
-
National Organization for Rare Diseases (NORD) rarediseases.org
Helps people (all ages) with rare orphan diseases through information, programs of education, advocacy, research, and service.
Contact Information
203-744-0100 800-999-6673
Address
55 Kenosia Avenue, Danbury, CT 06810
-
Genetic Alliance geneticalliance.org
An organization devoted to promoting optimum healthcare for people suffering from genetic disorders. Network of 1000 disease-specific advocacy organizations. Resources include online genetic testing database, provides information about support groups, clinical descriptions, treatments, research, insurance issues.
Contact Information
www.diseaseinfosearch.org
-
Brain Injury Association of New York State (BIANYS) bianys.org
Advocates on behalf of individuals with brain injuries and their families, and promotes prevention. Provides education, advocacy, and community support services that lead to improved outcomes for children and adults with brain injuries and their families. Provides a toll-free Family Help Line, chapters & support groups.
Contact Information
518-459-7911
Family Help Line: 1-800-444-6443 or 1-800-228-8201
Address
10 Colvin Avenue, Albany, NY 12206